NEW HOPE RESEARCH FOUNDATION

Providing new hope to those with lysosomal storage diseases.

North Oaks, MN   |  http://www.newhoperesearch.org

Mission

The New Hope Research Foundation is a non-profit organization dedicated to: - Finding a genetic cure for GM2 gangliosidosis and other lysosomal storage diseases that affect the central nervous system, and - Providing hope to patients and their families currently facing the degenerative and debilitating aspects of these diseases. To accomplish these goals, the New Hope Research Foundation coordinates, conducts, and financially supports: - Research on gene therapies and the means of correcting genetic deficiencies of the central nervous system, - Clinical studies intended to show safety and efficacy of gene therapies, - Regulatory applications to initiate clinical trials, and - Education and communication for patients and families on the related research and clinical studies.

Notes from the nonprofit

The New Hope Research Foundation has made significant progress in medical research for a gene therapy to treat a lysosomal storage disease, GM2 Gangliosidosis. The Foundation is currently planning and initiating pre-clinical studies for this treatment.

Ruling year info

2007

President

John (Jack) G Keimel

Board Member

Ellen L Kraft

Main address

6 Charley Lake Ct

North Oaks, MN 55127 USA

Show more contact info

EIN

87-0790903

NTEE code info

Birth Defects, Genetic Diseases Research (H20)

Brain Disorders (H48)

Specifically Named Diseases Research (H80)

IRS filing requirement

This organization is required to file an IRS Form 990-PF.

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Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The New Hope Research Foundation was established as a non-profit organization in 2006 to support scientific research and clinical studies needed to help patients neurologically impacted by lysosomal storage diseases. As the initial area of focus, the foundation is conducting and coordinating gene therapy research that might lead to a cure for the hexosaminidase A enzyme deficiency that causes GM2 gangliosidosis, more commonly called Tay-Sachs Disease. Great strides have been made in the scientific understanding of this disease and related gene therapies, but finding a cure will still require extensive scientific research. The New Hope Research Foundation supports this advanced research and has a mission and charter to translate this knowledge into clinical studies and to make effective therapy available to patients.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Gene Therapy Medical Research

The New Hope Research Foundation is conducting medical research in the hope of finding a genetic cure for lysosomal storage diseases that affect the central nervous system. The research is being conducted at a number of academic and hospital associated research institutes in the United States and Canada.

Population(s) Served
People with diseases and illnesses
People with disabilities

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The New Hope Research Foundation has been established to
coordinate, conduct, and financially support:

Research on gene therapy and the means for infusing or delivering gene vectors to
correct lysosomal enzyme deficiencies of the central nervous system,

Clinical studies intended to show safety and efficacy of gene therapy for the central
nervous system aspects of lysosomal storage diseases,

Regulatory applications required to initiate investigations of clinical studies and the
regulatory submissions required to allow patient access to proven therapies, and

Education and communication for patients and families on the clinical manifestations
and molecular basis of gangliosidosis and related diseases, on the mechanism of gene
therapy, and on the status of related research and clinical studies.

The New Hope Research Foundation is conducting medical research to find a genetic cure for lysosomal storage diseases that affect the central nervous system. The medical research is being conducted by world experts at academic and hospital research centers. The New Hope Research Foundation serves to identify, fund, and coordinate these research activities.

The New Hope Research Foundation is being led by individuals with both a keen understanding of the diseases under investigation and a history of successful research and development projects. The New Hope Research Foundation has identified, funded, and coordinated research activities at world leading centers for genetic engineering, biochemistry, and pre-clinical studies.

Medical research conducted by the New Hope Research Foundation has supported major advancements in gene therapy. Recent scientific publications have summarized some of these advancements:

Tropak, M. B. et al. Construction of a hybrid beta-hexosaminidase subunit capable of forming stable homodimers that hydrolyze GM2 ganglioside in vivo. Molecular therapy. Methods & clinical development 3, 15057, doi:10.1038/mtm.2015.57 (2016).

Karumuthil-Melethil, S. et al. Novel Vector Design and Hexosaminidase Variant Enabling Self-Complementary Aav for the Treatment of Tay-Sachs Disease. Human gene therapy, doi:10.1089/hum.2016.013 (2016).

Osmon, K. J. et al. Systemic Gene Transfer of a Hexosaminidase Variant Using a scAAV9.47 Vector Corrects GM2 Gangliosidosis in Sandhoff Mice. Human gene therapy, doi:10.1089/hum.2016.015 (2016).

Keimel, J. G. et al., Gene Transfer to the Central Nervous System for Treatment of GM2 Gangliosidosis, Institute for Engineering in Medicine Annual Meeting (2015)

Sinici, I. et al. In cellulo examination of a beta-alpha hybrid construct of beta-hexosaminidase A subunits, reported to interact with the GM2 activator protein and hydrolyze GM2 ganglioside. PLoS ONE 8, e57908, doi:10.1371/journal.pone.0057908 (2013).

Clarke, J. T. et al., 2011, An open-label Phase I/II clinical trial of pyrimethamine for the treatment of patients affected with chronic GM2 gangliosidosis (Tay-Sachs or Sandhoff variants). Molecular genetics and metabolism 102, 6-12

Financials

NEW HOPE RESEARCH FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
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NEW HOPE RESEARCH FOUNDATION

Board of directors
as of 1/12/2022
SOURCE: Self-reported by organization
Board co-chair

Jack Keimel

New Hope Research Foundation

Term: 2006 - 2017


Board co-chair

Ellen Kraft

New Hope Research Foundation

Term: 2006 - 2017

Raymond Schreyer

New Hope Research Foundation

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? No
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 12/23/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Sexual orientation
Decline to state
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Decline to state
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 12/23/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.